11 hours ago, Walden Rev said:

I am experimenting right now. Does the low suppresion from Lions Mane cause a positive rebound on the whole system, or has it to be a mix of both worlds. Interesting stuff

Im super curious with how you go with these 2 products.

im keen to know how you feel on both and then how you go just on one of them at a time??

The Cordyceps sounds like a beneficial product Ive gotta say!!!

I have never believed that pyroluria was genetic - it doesn't make sense.
There is a podcast, which I am sure I posted last year, where a doctor said he found pyrolles in the urine of a man with PFS and was able to treat him successfully. The point here is that the man had pyroluria infection not necessarily PFS. Has anyone been tested?
Given that it is a complicated multi faceted disease, just like we understand PAS to be - following a pyroluria protocol won't hurt
Interesting that it causes anxiety.

I have some case histories trickling in but I have had no response from the vets - come on guys, we must stop this from happening to other young people. Please make the effort of just one email and I will leave you all alone.

On 5/17/2018 at 2:08 AM, Colinboko said:

I had high DHEA !
85-690 and mine is 757

my FSH was also high

1.6-8.0 and mine was 9.5

What are you main persisting side effects? Do you have sexual dsyfunction? Loss of libido etc.

On 5/21/2018 at 10:14 AM, Walden Rev said:

Ok

fir the people who are trying Lions Mane

Lions Mane = 5AR downregulator
Cordyceps = 5AR upregulator (it also stops the breakdown of dopamine)

Cordy gives me good energy, no more yawning throughout the day.
sometimes a bit irritated

Do you have any evidence/articles to back up these either of these are 5AR up or down regulators?

@mariovitali
Been a little bit. I'll be real brief what im currently looking at.
Im done with supplementing vitamin k2 directly. Although there is alot of positive research on k2, I believe it can become just like any other nutrient and feed the wrong bacteria. Meaning pathogens. There is evidence of this.

But im not done with this so to speak because im looking at the bacteria itself that produces k2.
Bacillus subtilis.
Also other Bacilli species such as Bacillus coagulans and Bacillus Clausii.
The main focus will be on Bacillus subtilis for now.
These are more newly available as supplements.
As for Lions Mane I see it as a fungus that's capable of altering the microbiome and/ormycobiome.
Alterations can happen fast. Within a matter of days.

What happens if things continue to shift in the wrong direction?
Death and Disease.

To give you a glimpse of what im talking about.

Microbial flora, probiotics,Bacillus subtilisand the search for a long and healthy human longevity
http://microbialcell.com/researcharticles/microbial-flora-probiotics-bacillus-subtilis-and-the-search-for-a-long-and-healthy-human-longevity/

Shifts in the microbiome impact tissue repair, regeneration

August 26, 2016

Stowers Institute for Medical Research

A definitive link between the makeup of the microbiome, the host immune response, and an organisms ability to heal itself has been confirmed by scientists.
https://www.sciencedaily.com/releases/2016/08/160826151746.htm

@flynn
As for the other.

FDA Scrutinizes Antibacterial Products for Hormonal Disruption ...

5 hours ago, guitarman01 said:

@mariovitali
Been a little bit. I'll be real brief what im currently looking at.
Im done with supplementing vitamin k2 directly. Although there is alot of positive research on k2, I believe it can become just like any other nutrient and feed the wrong bacteria. Meaning pathogens. There is evidence of this.

But im not done with this so to speak because im looking at the bacteria itself that produces k2.
Bacillus subtilis.
Also other Bacilli species such as Bacillus coagulans and Bacillus Clausii.
The main focus will be on Bacillus subtilis for now.
These are more newly available as supplements.
As for Lions Mane I see it as a fungus that's capable of altering the microbiome and/ormycobiome.
Alterations can happen fast. Within a matter of days.

What happens if things continue to shift in the wrong direction?
Death and Disease.

To give you a glimpse of what im talking about.

Microbial flora, probiotics,Bacillus subtilisand the search for a long and healthy human longevity
http://microbialcell.com/researcharticles/microbial-flora-probiotics-bacillus-subtilis-and-the-search-for-a-long-and-healthy-human-longevity/

Shifts in the microbiome impact tissue repair, regeneration

August 26, 2016

Stowers Institute for Medical Research

A definitive link between the makeup of the microbiome, the host immune response, and an organisms ability to heal itself has been confirmed by scientists.
https://www.sciencedaily.com/releases/2016/08/160826151746.htm

@flynn
As for the other.

FDA Scrutinizes Antibacterial Products for Hormonal Disruption ...

https://www.wired.com/2013/12/fda-triclosan-rule/

When talking about lions mane and its ability to alter microbiome, do you mean in a good way or detrimental way??

23 hours ago, flynn said:

What are you main persisting side effects? Do you have sexual dsyfunction? Loss of libido etc.
Do you have any evidence/articles to back up these either of these are 5AR up or down regulators?

On 5/23/2018 at 5:55 PM, flynn said:

Hi people,

Just a reminder, if you haven't already. Please sign up to the Post Accutane Syndrome forum. It will be very useful in the future if we grow a community there for things such as fundraising, finding research volunteers and sharing information etc.

I think a great start would be making contact with a researcher such as Roberto Melcangi (He conducts the PFS studies) to conduct a study similar to the post finasteride study on PAS patients. To determine if PAS people have differences in neuroactive steroid levels etc.

https://pasforum.info/

Consider adding your forum to Google's index. It doesn't seem to appear in any search results at the moment. ...Not good if you want people to find it by other means than through this thread.

https://support.google.com/webmasters/answer/6259634?hl=en

@guitarman01@Dubya_B@TrueJustice@hatetane

I believe i know the full mechanism of what is going on. So i am asking you who i tagged or anyone else reading this :

If i am ready to suggest a way to get people out of this mess and to have it evaluate it by Medical professionals :

1) What do i do
2) Where do i speak about this

FWIW, My belief is that no one will listen and really look at this.

Looking forward to your thoughts / suggestions.

PS : Lion's Mane may be a 5AR Inhibitor. Not good.

https://www.ncbi.nlm.nih.gov/pubmed/16029938

and

https://lostempireherbs.com/anti-androgenic-effects-reishi/

Colinboko- the product Cordyceps sounds like something you and I might benefit from with many of our issues being similar in nature. Especiallysince you suffer kidney issues - my understanding is the product is very good at treating the kidneys.

My concern though is it might be a 5 alpha reductace inhibitor like lions mane
That was disappointing to hear given some of the other benefits this products had to offer!!

Maybe someone can shed some light on whether it is or isnt an inhibitor?

9 hours ago, TrueJustice said:

Colinboko- the product Cordyceps sounds like something you and I might benefit from with many of our issues being similar in nature. Especiallysince you suffer kidney issues - my understanding is the product is very good at treating the kidneys.

My concern though is it might be a 5 alpha reductace inhibitor like lions mane
That was disappointing to hear given some of the other benefits this products had to offer!!

Maybe someone can shed some light on whether it is or isnt an inhibitor?

Cordyceps does the opposite. Upregulation.

I have all the symptoms of estrogen dominance and my estradiol actually was pretty high

high dhea = more converting to estrogen than testosterone

which would explain the hyperimmunity

Colinboko- I take it the other stuff you were just taking yielded nothing!?

On 27/05/2018 at 1:22 AM, mariovitali said:

@guitarman01@Dubya_B@TrueJustice@hatetane

I believe i know the full mechanism of what is going on. So i am asking you who i tagged or anyone else reading this :

If i am ready to suggest a way to get people out of this mess and to have it evaluate it by Medical professionals :

1) What do i do
2) Where do i speak about this

FWIW, My belief is that no one will listen and really look at this.

Looking forward to your thoughts / suggestions.

PS : Lion's Mane may be a 5AR Inhibitor. Not good.

https://www.ncbi.nlm.nih.gov/pubmed/16029938

and

https://lostempireherbs.com/anti-androgenic-effects-reishi/

In a nutshell Id say youll have to seek out a Dr who practices alternative medicine, cant think anyone can do anything going down the more common path i.e seeing your GP even though I still respect mine, its just that shes very mainstream in what she does - thats fine.

The other thing is, if you have a great theory than wed love to hear about it and maybe others can reach out to alternative doctors where they reside...

Thanks

1 hour ago, TrueJustice said:

Colinboko- I take it the other stuff you were just taking yielded nothing!?

In a nutshell Id say youll have to seek out a Dr who practices alternative medicine, cant think anyone can do anything going down the more common path i.e seeing your GP even though I still respect mine, its just that shes very mainstream in what she does - thats fine.

The other thing is, if you have a great theory than wed love to hear about it and maybe others can reach out to alternative doctors where they reside...

Thanks

I didnt even finish it. But it was also 4mg of prednisone. Ehohel took 60mg when he felt great!

44 minutes ago, Colinboko said:

2 hours ago, TrueJustice said:

Colinboko- I take it the other stuff you were just taking yielded nothing!?

In a nutshell Id say youll have to seek out a Dr who practices alternative medicine, cant think anyone can do anything going down the more common path i.e seeing your GP even though I still respect mine, its just that shes very mainstream in what she does - thats fine.

The other thing is, if you have a great theory than wed love to hear about it and maybe others can reach out to alternative doctors where they reside...

Thanks

I didnt even finish it. But it was also 4mg of prednisone. Ehohel took 60mg when he felt great!

You seemed pretty excited about it a week or so ago....did you get a negative response and stopped it??

I dont mind self diagnosing with supplements etc but personally wouldnt take something like that - each to their own I guess. I totally get why some people are going to experiment with prescription drugs though, you get that fucked off with this situation that you just latch on to anything....

11 minutes ago, TrueJustice said:

You seemed pretty excited about it a week or so ago....did you get a negative response and stopped it??

I dont mind self diagnosing with supplements etc but personally wouldnt take something like that - each to their own I guess. I totally get why some people are going to experiment with prescription drugs though, you get that fucked off with this situation that you just latch on to anything....

No negative response. Just wasnt doing anything at such a low dose. It was a dose for migraines. Not enough to treat an autoimmune disorder.

Dont see you trying anything or getting tests done?

Nothing of late - thats true.

ive just done so many blood tests over the years only to conclude nothing so what do you do?

might get the dhea test just to see.

the other thing to look into speaking of head tension would be to see a neurologist- thats something I havent pursued - for me its just inflammation so what do they do for that?

I dont get massive headaches, more just a general tension in the head.

Doesnt DHEA convert more to estrogen in men than testosterone?

Just a thought for those who have off the chart DHEA levels like I do.

I looked at it on the weekend

In a nutshell my thoughts are he could be correct about needing to avoid Vit A, he offers up a Vit A free diet too.

Would this be enough to fix an Accutane victim? Prob not - if what they say on the PAS forum is true, that tane effects the HPA axis in the brain, is avoiding Vit A going to reverse that - Im going to say absolutely not.

Could avoiding Vit A be a good thing? Possibly but Im looking for a cure from Accutane damage so avoiding Vit A might only be a small thing in all of this, not to mention Im still confused on why certain doctors have actually put tane victims on VitA......tell me what thats all about???

The confusion continues.....

Im sure this theory has been discussed here many times by far more knowledgeable people than myself but what do people think about all these issues we have being down to chronic vitamin A toxicity?
Maybe a low vitamin A diet can allow the body to get rid of excess vitamin A/Retinol stored in the liver and kidneys if you believe the theory.
I certainly have plenty of the symptoms of vitamin A toxicity and have had them for about 5 years.
Tension headaches caused by possible raised intracranial pressure, night blindness, sensitivity to sunlight, dizziness, bone pain, fatigue

6 hours ago, TrueJustice said:

I looked at it on the weekend

In a nutshell my thoughts are he could be correct about needing to avoid Vit A, he offers up a Vit A free diet too.

Would this be enough to fix an Accutane victim? Prob not - if what they say on the PAS forum is true, that tane effects the HPA axis in the brain, is avoiding Vit A going to reverse that - Im going to say absolutely not.

Could avoiding Vit A be a good thing? Possibly but Im looking for a cure from Accutane damage so avoiding Vit A might only be a small thing in all of this, not to mention Im still confused on why certain doctors have actually put tane victims on VitA......tell me what thats all about???

The confusion continues.....

I haven't read the entire ebook yet, there is a section on Accutane though, did you read that?

You say your looking for a cure from Accutane damage but i've always believed that the body will heal itself if allowed. Perhaps continuing vitamin A consumption in the diet is keeping us above some threshold level and the body has never been able to get rid of it, hence the never ending symptoms.

I think it's an interesting theory. Not as complex as many discussed on this thread but does it have to be?

Thanks,
Lee

25 minutes ago, marshl1 said:

I haven't read the entire ebook yet, there is a section on Accutane though, did you read that?

You say your looking for a cure from Accutane damage but i've always believed that the body will heal itself if allowed. Perhaps continuing vitamin A consumption in the diet is keeping us above some threshold level and the body has never been able to get rid of it, hence the never ending symptoms.

I think it's an interesting theory. Not as complex as many discussed on this thread but does it have to be?

Thanks,
Lee

Valid point!!

But again does anyone have some insight into why certain doctors have put Tane victims on Vit A to cure condition??

successfully too I believe - to my knowledge this is not even disputable, it definitely happened.

You could be bang on with us needing to avoid Vit A, I just need to know more on why doctors use Vit A to fight the side effects of the Synthetic crap that is Accutane??

The only time Ive heard of someone being put on Vit A to cure a condition was that Indian child who displayed actual symptoms of Vitamin A deficiency such as night blindness?

Ive heard of that case too along with the Accutane story - its actually on this forum somewhere....if nothing else the theory of it interests me.

That being said, I would be more inclined to believe that we have a toxicity issue, the longer you go post tane it would seem the better off you are avoiding Vit A
Perhaps you can treat tane issues with A but you probably have to do it straight away, not months or years later like most of us on this forum.

You do know about the theory that tane stays in your system yeah - theres that YouTube video of supplements to take to rid it from your system - Calcium D Glucarate was part of it along with some other stuff.

5 hours ago, TrueJustice said:

Valid point!!

But again does anyone have some insight into why certain doctors have put Tane victims on Vit A to cure condition??

successfully too I believe - to my knowledge this is not even disputable, it definitely happened.

You could be bang on with us needing to avoid Vit A, I just need to know more on why doctors use Vit A to fight the side effects of the Synthetic crap that is Accutane??

You are right and this is just plain weird to me. Makes no sense.

Here is a link to a documented case of accutane induced night blindness which they claim was successfully treated with Vitamin A supplementation. But I have read that night blindness is a symptom of hypervitaminosis A, so surely the last thing you would treat it with would be Vitamin A!
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4533586/

And the guy who's written the ebook (that btw seems to be getting quite a lot of attention) claims that Vitamin A is not actually a vitamin, it's a toxin and could be wholly responsible for causing every autoimmune disease imaginable!?

Do we even know if Accutane is causing a surplus of Vitmain A or Retinol or whatever, or is it causing a deficiency?

I need to study more of this ebook but something seems fishy to me.

Thanks

3 hours ago, TrueJustice said:

Ive heard of that case too along with the Accutane story - its actually on this forum somewhere....if nothing else the theory of it interests me.

That being said, I would be more inclined to believe that we have a toxicity issue, the longer you go post tane it would seem the better off you are avoiding Vit A
Perhaps you can treat tane issues with A but you probably have to do it straight away, not months or years later like most of us on this forum.

You do know about the theory that tane stays in your system yeah - theres that YouTube video of supplements to take to rid it from your system - Calcium D Glucarate was part of it along with some other stuff.

I do know about that and I tried it. I kind of gave up half way through and didn't finish the supplements. Im guilty of trying too many different things at once. I'll go back to the video and finish the remaining supplements I have.

Thanks